LexieCat Posted December 10, 2020 Share Posted December 10, 2020 So my latest scans were, as the doc put it, as good as one could hope for. "Completely stable." I asked for clarification--whether that's the same as NED. He said, essentially, yes. There are still a few small nodules, where they have been all along. No enlarged lymph nodes. The unhealed clavicle fracture COULD be indicative of an undetected bone met but was of no concern due to the terrific response elsewhere. So bottom line is that, in context, there is nothing that indicates any active cancer. Thus, today I started on the Alimta/Keytruda maintenance therapy. Same dosage/schedule as before. Since they eliminated the Carboplatin, they also eliminated the EMEND (anti-nausea infusion). Altogether, cut the infusion time just about in half, which is terrific, too. I confirmed that this therapy will continue "indefinitely." He said yes, with a caveat that they will re-evaluate whether to continue the Keytruda after two years. He said the Alimta would continue indefinitely, till something changes. That kinda surprised me, as I know most people here seem to drop the Alimta before the Keytuda. He moved up my back MRI (back still feeling OK ATM) to tomorrow from next week--he didn't want it to wait that long. Which I guess is a good thing, just wondering if he's concerned about bone mets. I'll ask him to call me as soon as he's seen the results. I had my scan reports printed out and missed a couple things I wanted to ask about since I saw the doc--I'll send him a note to ask. One is that the scan reports talk only about the nodules in my left lung--this time the primary tumor was in the right lung. Oddly, one finding talks about a "cluster of sub centimeter nodules in the left upper lobe"--that's the lobe that was removed! The one thing it says about the right lung is "Band-shaped opacities in the perihilar right lower have not significantly changed." Does that mean the tumor identified on the right is gone? I also wanted to ask if the scan schedule will continue as it has been, with every other visit/infusion. Right now, I don't want them spread too far out from each other. I really do love my doctor. I embarrassed myself momentarily reaching out to shake his hand, and he kindly reminded me not to touch. We did an "air elbow bump" instead. But really, I love the way he talks to me, explains things, and gets me whatever I need ASAP. I'm SO glad I chose him--this is Dr. Bauml, who was so impressive in his presentation for the Lungevity survivors' conference this year (which I didn't know at the time I met him!). Link to comment Share on other sites More sharing options...
Sabacat Posted December 10, 2020 Share Posted December 10, 2020 Fantastic news!!! conCATulations! 😻 Link to comment Share on other sites More sharing options...
BridgetO Posted December 10, 2020 Share Posted December 10, 2020 Yay! Wow! What great news! Happy dance for you! Link to comment Share on other sites More sharing options...
BridgetO Posted December 10, 2020 Share Posted December 10, 2020 Oops, maybe I shouldn't have mentioned dance. You might hurt yourself. Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 OK, I was composing my question(s) for my oncologist on the portal, when I re-examined the last scan report (which this one was comparing to). That one described the "opacities" in slightly different terms, but said that part of it was resolved and the shrinkage of the remaining part was likely due to chemo response. I remember the doc showing me on the scan itself the area that is referring to, and I asked if that could be scar tissue and he said yes. So the remaining questions were about the reference to the left upper lobe (whether that was a typo or they meant the upper part of the remaining [lower] left lobe), and how often we would be doing scans going forward. I already heard back from the NP re the scan schedule--it will be every third infusion (every 9 weeks) for now. I can live with that. She said she'd have Dr. Bauml answer my question about the CT scan report. Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 4 minutes ago, BridgetO said: Oops, maybe I shouldn't have mentioned dance. You might hurt yourself. Sadly, you know me all too well. Childhood nickname, remember: "Princess Grace." Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted December 10, 2020 Share Posted December 10, 2020 So happy for your good news! Link to comment Share on other sites More sharing options...
GaryG Posted December 10, 2020 Share Posted December 10, 2020 Hi Lexie: Congratulations on a good report. I am on the one scan per 9 weeks infusion of Alima/Keytruda. My oncologist told me as long as I tolerate the combo I will stay on it and if not he will drop the Alimta . My radiologist report mentioned one node of 1.2 cm and 2 lymph nodes of the same size. When I asked how come he does not take the radiotherapy route he said when chemo is working (reducing or stable) radiology is not an option because it more risky. He also told me that one centimeter is not big enough for radiotherapy. I also got the same answer as you regarding the scar tissue. I also asked if he can tell me whether the node and lymph nodes are cancerous and his answer was "the only way I can tell is via biopsy". The question I forgot to ask is how do you determine if a person is N.E.D but that will be for next time. I suppose a Pet Scan is a better way to tell except it is too expensive. It will be good to compare notes as we go so we can keep these oncologists on their toes. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 10, 2020 Share Posted December 10, 2020 Onward! Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 Hi, Gary, Yeah, it does seem that not everyone uses the term "NED"--maybe that applies only when there is literally nothing that could be deemed in any way potentially suspicious--e.,g., tumor fried/surgically removed, all lymph nodes normal, no visible lesions. I'm just speculating--some oncologists may have their own preferred terms, as well. Please let me know what your guy tells you. And my guy told me they would do another PET scan only if there is a sign of progression or other worrisome symptoms, or a change in treatment plan. I'd sure like to have a PET right now, but I do feel confident my oncologist will insist on whatever imaging is necessary (e.g., he moved up my spinal MRI from next week to tomorrow so we don't wait too long on anything potentially significant). Let's face it--I think we ALL would like to have more info than it's always practical or possible to get. Link to comment Share on other sites More sharing options...
Sabacat Posted December 10, 2020 Share Posted December 10, 2020 Ain't THAT the truth!!! 😉 Andy's anxious now about how they know what's happening with this radiation therapy since there are no scans scheduled. Guess we'll ask the rad onc when we see him on Monday. And I think they'll postpone my next infusion (supposed to be two weeks after finishing the radiation) due to the steroid round just started, which will last 3 more weeks from now, plus another week afterward to 'normalize'. Betting they'll do scan when I return for that, which likely won't be till at least Jan. 6 or 13th. I would also LOVE to have another PET to see what's REALLY left to work on! Link to comment Share on other sites More sharing options...
Cin Posted December 10, 2020 Share Posted December 10, 2020 LexiCat, I've been reading your posts and am so happy to hear this news. Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 Yeah, but we gotta remember, not all bits of cancer light up on a PET scan, and sometimes it lights up for reasons of inflammation, etc., not cancer. I think a biopsy really IS the only way to be sure, and nobody's gonna get opened up every few weeks for that. I think we just have to accept a certain amount of "unknowns"--and take the attitude that "no news is good news" (or, as I told my surgeon after my pathology following the lobectomy showed no cancerous lymph nodes, "No nodes is good news."). It took him a few minutes to get the joke, and he looked pained when he did. Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 BTW, my next visit (with the NP) and infusion are scheduled for NYE. I suggested to the infusion staff that they offer all patients that day a flute of champagne to celebrate surviving 2020. Actually, surviving cancer ANY year is something to celebrate, but 2020 is, ya know, SPECIAL. And I don't even drink--just thinking of those who do (I might donate mine to my chemo nurse, lol). Link to comment Share on other sites More sharing options...
Tom Galli Posted December 10, 2020 Share Posted December 10, 2020 Lexie, I find the most important paragraph in any scan report is "Impression." In my scans, I still see references to nodules, hyper dense structures and such. But the impression paragraph has words that suggest no active disease. I hope yours states the same. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 "IMPRESSION: 1. Unchanged small lung nodules of indeterminate etiology. [I take that to mean no clue if they are cancer or what--though "unchanged" sounds like a good thing.] 2. Unchanged displaced fracture of the medial right clavicle, without visible healing reaction, raising suspicion for a pathological fracture. [Not sure that's accurate--my orthopedic surgeon said the healing is slow but appears to be happening. Will be interesting to see what Zometa does--if that starts moving things along. I see that doctor next week and will get new x-rays.] Pulmonary nodule follow-up recommendation: [LNO] [not sure what LNO means] Continued imaging follow up with chest CT may be performed per the clinical protocol regarding the primary neoplasm." Link to comment Share on other sites More sharing options...
Tom Galli Posted December 10, 2020 Share Posted December 10, 2020 I read good news! I don't know what LNO means either. But, I don't see any indication in the Impression of metastatic disease so I think it worthy of celebration! Hooray! Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted December 10, 2020 Author Share Posted December 10, 2020 13 minutes ago, Tom Galli said: I don't know what LNO means either. I'm thinking "lung nodule" something? It's under "recommendation...." Link to comment Share on other sites More sharing options...
Barb1260 Posted December 10, 2020 Share Posted December 10, 2020 Yay! Sounds good. You are a super warrior! Happy holidays Link to comment Share on other sites More sharing options...
Jennedy Posted December 11, 2020 Share Posted December 11, 2020 Great news! I'll celebrate for you. Having a glass of wine. 🍷 Link to comment Share on other sites More sharing options...
LexieCat Posted December 11, 2020 Author Share Posted December 11, 2020 Attagirl! As long as it doesn't mess with your meds, go for it! I'm toasting with iced tea--equally celebratory, especially if you pair it with something sweet. Link to comment Share on other sites More sharing options...
LexieCat Posted December 11, 2020 Author Share Posted December 11, 2020 Incidentally, what is it with these oncologists and their SOCKS?? My first medical oncologist at MD Anderson at Cooper Hospital--the guy who moved to Minneapolis just before my Stage IV diagnosis--was known as the "socks doc"--he had these amazing socks and I'd look forward to checking out the latest every visit. Today, I asked Dr. Bauml whether those were octopi all over his socks. Turned out that no, they were banana peels--with eyes. Does an oncologist who identifies with banana peels inspire confidence? One hopes one's oncologist is less accident-prone than oneself, doesn't one? Just sayin'. Link to comment Share on other sites More sharing options...
GaryG Posted December 11, 2020 Share Posted December 11, 2020 2 hours ago, Sabacat said: Andy's anxious now about how they know what's happening with this radiation therapy since there are no scans scheduled. Hi Susan: I thought radiation therapy is done while the are watching the area with a scope or a scanner. Otherwise how would they know where and what to radiate. Link to comment Share on other sites More sharing options...
LexieCat Posted December 11, 2020 Author Share Posted December 11, 2020 Actually, I just remembered--these two docs know each other--they trained together at some point. So maybe one inspired/encouraged/inveigled the other to indulge this sartorial quirk. Link to comment Share on other sites More sharing options...
LexieCat Posted December 11, 2020 Author Share Posted December 11, 2020 7 minutes ago, GaryG said: Hi Susan: I thought radiation therapy is done while the are watching the area with a scope or a scanner. Otherwise how would they know where and what to radiate. That's a good point--they are looking at it every time it's treated. So they can see the change, no doubt, from session to session. And I'm sure there will be scans down the road from it to see what happens afterward. Link to comment Share on other sites More sharing options...
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